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What have you found helpful in getting started sharing your health advocacy journey?

If you are an experienced health leader and advocate, what advice or tips can you give to someone looking to get started in health advocacy?

  1. I started decades ago when my family experienced the frustration of not being able to get the asthma inhalers we needed. Remember - if you have seen one person with asthma, you have seen one person with asthma. So an inhaler that may work for one person may not work for another person with asthma.
    I read magazines in my asthma specialist's office for asthma (yes, that's all we had back then before smart phones....). I contacted that allergy & asthma nonprofit to see how I can become involved and help them. (Hint: contact an agency that educates about your medical condition, they love volunteers!)
    We were invited to Allergy & Asthma Day on Capitol Hill, and our family was able to share our experiences with asthma, talk about the lack of funding, etc.
    We continued to advocate for almost a decade during the annual May event. Since I worked for a government agency at the time, I could only educate while my kids could advocate and "do the ask" for our reps support on a bill.
    I met other asthma advocates from across the U.S. and am still in contact with them today. We collaborate on many asthma education projects and conferences.
    We are lucky to be able to advocate on behalf of those that can't
    As a Certified Asthma Educator and Public Health Professional, I feel strongly about advocating on behalf of those I help with their asthma!

    1. I started by creating my MS Fit Challenge GYM Facebook page (now called Meta!). There, I began sharing my expertise in fitness and inviting people with MS and fitness professionals interested in helping the MS community to join. We are now at over 11,000 members and growing daily. The interaction, support, and information shared are so valuable to all of us. In fact, it has helped so many people with MS that now we have opened it up to all chronic conditions as the info is useful to anyone with challenges to fitness. We do monthly fitness challenges that allow members to post progress and engagement. My advice is to begin at the beginning! Find a social media platform you are comfortable with, whether that's FB (Meta), Instagram, Twitter (X), etc., and create a group that speaks to your audience. The more interaction and information you provide, the more people will follow. If you'd like to see and/or participate in the group, here is a link:

      1. In an attempt to “pay it forward,” I wrote an article for our 55+ community newsletter about advocating for Macular Degeneration (AMD). From that article, many residents came forward to share their stories with me and I realized how many had low vision challenges right in our community. What was missing was a connection with others with similar challenges where we could share resources and support one another. That gave me the idea to start a V.I.P. Group (Visually Impaired People). I talked with our Lifestyle Director who was very supportive. We now meet quarterly with different topics each meeting. Sometimes we have guest speakers, other times we have residents speak and soon, we are having a travel agent suggest travel tips who is visually impaired herself. It has taken off. We average 30 participants a meeting and have over 40 members. It has also led me to connecting with our city’s council to address transportation & the possibility of creating a group for the city. It just keeps mushrooming ~ it seems to have taken on a life of its own. I love being a part of this advocacy & being able to “pay it forward!”

        1. Hello , When I first started on this journey. I didn't have a clue what advocacy was. I had my very first meeting in a library in Washington DC. 3 people showed up, at the next meeting 10. In a year I had 150 people attending. It was not easy getting to this point. Back in the day, social media wasn't such a big thing. You had to write letters; I would visit hospitals, doctor's offices, and businesses. I contacted different organizations that started helping me with speakers, programs, food, and drinks. It was a hard journey, but worth every step. My advice is to never give up and let your voice be heard. Diane (Team Member)

          1. You have done an incredible job in your advocacy work and have made such a name for yourself in the psoriasis awareness space! The community is SO fortunate to have you! Keep up the great work!!

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